Horan Madeline R, Sim Jin-Ah, Krull Kevin R, Baker Justin N, Huang I-Chan
Department of Epidemiology and Cancer Control, St. Jude Children's Research Hospital, Memphis, TN 38105, USA.
School of AI Convergence, Hallym University, Chuncheon 200160, Korea.
Children (Basel). 2022 Sep 30;9(10):1497. doi: 10.3390/children9101497.
Patient-reported outcomes (PROs) are used in clinical work and research to capture the subjective experiences of childhood cancer patients and survivors. PROs encompass content domains relevant and important to this population, including health-related quality-of-life (HRQOL), symptoms, and functional status. To inform future efforts in the application of PRO measures, this review describes the existing generic and cancer-specific PRO measures for pediatric cancer populations and summarizes their characteristics, available language translations, content coverage, and measurement properties into tables for clinicians and researchers to reference before choosing a PRO measure that suits their purpose. We have identified often unreported measurement properties that could provide evidence about the clinical utility of the PRO measures. Routine PRO assessment in pediatric cancer care offers opportunities to facilitate clinical decision-making and improve quality of care for these patients. However, we suggest that before implementing PRO measures into research or clinical care, the psychometric properties and content coverage of the PRO measures must be considered to ensure that PRO measures are appropriately assessing the intended construct in childhood cancer patients.
患者报告结局（PROs）在临床工作和研究中用于获取儿童癌症患者及其幸存者的主观体验。PROs涵盖了与该人群相关且重要的内容领域，包括健康相关生活质量（HRQOL）、症状和功能状态。为了为未来PRO测量的应用提供参考，本综述描述了现有的针对儿科癌症人群的通用和癌症特异性PRO测量方法，并将其特征、可用语言翻译、内容覆盖范围和测量属性汇总成表格，供临床医生和研究人员在选择适合其目的的PRO测量方法之前参考。我们确定了一些经常未报告的测量属性，这些属性可以为PRO测量方法的临床实用性提供证据。儿科癌症护理中的常规PRO评估为促进临床决策和提高这些患者的护理质量提供了机会。然而，我们建议在将PRO测量方法应用于研究或临床护理之前，必须考虑PRO测量方法的心理测量属性和内容覆盖范围，以确保PRO测量方法能够适当地评估儿童癌症患者的预期结构。
